He wrote the book on love and the disabled

Dave Brown, Ottawa Citizen02.09.2013

Randy Romain who has written a book that takes a look at the love lives of the disabled. He knows the subject only too well and wife Maura Athayde knew full well what she was taking on.Bruno Schlumberger
/ Ottawa Citizen

OTTAWA — This is the week writers search for romance stories to mark St. Valentine’s Day, and if there’s a prize for the most unusual it should go to Randy Romain who has written a book that takes a look at the love lives of the disabled.

He knows the subject. He’s 54, quadriplegic, blind, and in love with the woman who married him 10 years ago. Maura Athayde knew full well what she was taking on, and she did not, at first, have the approval of her family. She was trained in architecture with a specialty in urban planning. Her sister, a medical doctor, refused a request to attend the wedding and stand beside her sister.

“You have no idea what you’re getting into,” Maura recalls her sister saying.

The broken-hearted bride called their mother. “My mother listened and said right away: ‘I see the problem. You are seeing with your love eyes, and your sister is seeing with her doctor eyes.’” The doctor-sister soon called back with an apology and a change of heart. The marriage was May 10, 2003.

Medics don’t have an answer for what happened to Randy, a native of Fort Coulonge, Que., 80 kilometres west of the capital. He was hit by an unidentified virus in his early teens and it quickly robbed him of mobility and sight. In his 20s, he was institutionalized, and in 2000 he was living at St. Vincent’s Hospital. He was also the institution’s resident activist. He represented those patients who were permanent residents, which was most of them, and started demanding they be treated less as patients. One complaint was that alcohol was banned, yet St. Vincent’s was their home.

There was resistance from administration, but Randy Romain proved to be one tough customer. When in 2001 his opponents became inflexible, in his opinion, he sought help from a newspaper columnist and took the argument public. He would go into my memory as the toughest man I ever met.

Those qualities were on display again recently when I sat in the Romains’ specially equipped apartment on Metcalfe Street. Randy can no longer move about on his own. He can’t breathe without assistance and is on a ventilator. It’s plugged into a wall outlet behind him. There’s a flatscreen television on the same wall. It’s also his computer screen. It doesn’t matter that it’s out of his line of sight. He doesn’t have sight. It has sound, and he hears.

When we first met, his typing boggled me. There was a metal tab placed near his head, and with the little mobility he had, he was able to tap it with his forehead. That changed and he now uses his left cheek to tap out Morse code for every letter, punctuation mark and computer command. A mechanical voice lets him know the result of every command.

How long did the 210-page book take? “The story didn’t take long. It was in my head. The typing took four years.”

Maura overheard that and joined us. “You’re bragging,” she said with a smile. They started taking verbal shots at each other and laughing. They finish each other’s sentences, and inject small corrections. Sometimes she rolls her eyes in humorous frustration. He can’t do that.

Back when he was fighting for his right to marry hospital volunteer Maura and live outside an institution, he edited himself. I didn’t learn until I read his book that he suffered a bathroom accident on departure day in 2001. He fell off a commode and broke a femur. His type of paralysis didn’t deaden feeling. He bit back the pain and didn’t mention it until he was out, then told Maura he needed to be taken to an emergency department.

They had been a popular couple at St. Vincent’s, and on moving day floor staff had food laid out for a farewell party. At the last minute, it was cancelled by a mid-level manager claiming she was only passing on orders.

Romain’s book, Facing the Challenge, lifts the covers on institutional love. People with disabilities find ways to feed the human hunger for sexual contact. Romain tells stories of physical frustration, with compassion and humour. The book is available in hardcover ($20) by calling 613-565-0654, It’s also available as an eBook.

Question to Maura: Any regrets?

“Randy’s disabilities disappear into our daily routine. I don’t think of (his care) as work. It’s part of every day. The important thing is being together.”